Author: heiditea

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Happy 10th Annie-versary to Me!

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Brain Aneurysm Survivor
My story in bullet points.

10 years ago today, my life changed when an 11mm (almost 1/2″ in size) brain aneurysm ruptured around 4:30 in the morning. Happy 10th Annie-versary to Me! That’s what brain aneurysm survivors call the anniversary of the day they found out they had a brain aneurysm, the day they had their surgery, or the day it ruptured. Each year a survivor is alive is a celebration and one that should be marked in some fashion. After losing my sister and my husband’s niece to sudden ruptured, and undetected brain aneurysms, I know all too well the horrific, and sudden toll this silent killer can take on families.

Last week I was lucky enough to take part in a brain aneurysm survivor’s breakfast in New York City leading up to the Cerebral Affair Gala that same night. Both events were hosted by two of the biggest players in the brain aneurysm awareness community: The Lisa Colagrossi Foundation and The Joe Niekro Foundation. As with our support group in Portland each month, the stories survivors tell are remarkable, heartbreaking, and inspiring all at the same time. Everyone’s story is different. Everyone’s brain aneurysm is different. And everyone’s struggle is different. However, we all share the same fears and anxiety that come with surviving. Why did I survive when countless other’s did not? Is the headache I have right now a symptom of another rupture? If I had one aneurysm, is it a certainty I’ll get another one?

Fellow Survivors & their Family Members
Some of the survivors & their family members who attended the survivors round-table and breakfast.

The survivor’s breakfast was a profound reminder of just how important it is that survivors tell their stories again and again to everyone and anyone who will listen. You never now when YOUR story will resonate with one person and one life could be saved.

I HAD heard the terms “brain aneurysm” prior to my rupture in 2006, but I had no idea it could be hereditary in some cases and I had no idea the damage it could do. I vaguely remember the ER doctor coming in and asking me if anyone in my family has a brain aneurysm. I THINK I may have said “yes” because my cousin Debbie had just gone through coiling a few years prior and I know my cousin Tim had suffered a rupture.

When the doctor said I had a ruptured brain aneurysm that was bleeding, I remember thinking “Well, that can’t be good.” I’m one of the lucky ones to even have any knowledge and memory of those events and discussions. For many, the damage with the initial rupture is too great to overcome. I am still able to work the job I left for six months to recover back in 2006. I am still able to drive. Many are not.

My deficits are embarrassingly minor compared to others. Fatigue lasted a LONG time. Maybe years. I was lucky enough to NOT have major headaches for long periods of time after my rupture but bending over at certain angles still causes discomfort. I can’t say it’s pain, but it isn’t pleasant. And coughing still causes discomfort and my brain can get easily over stimulated with visual or vocal clutter.

Because my rupture was coiled, I didn’t have any outward indication of surviving a brain injury unlike the craniotomy I endured in 2014 for a second un-ruptured brain aneurysm. I think that’s why people can assume you’re fine. Outwardly, you DO look fine, but inwardly, we are suffering and struggling and only another survivor can understand that.

The 2nd brain aneurysm I had was clipped and after my last angiogram, it appears to have completely gone away. The first one that ruptured 10 years ago this morning, is STILL giving me issues. The 16 platinum coils inserted into it started to compact after five years, then four more coils were added and a stent was inserted to allow the blood to flow PAST the aneurysm instead of into it. However, there is still a little remnant of blood between the neck and the stent. It’s the annie that won’t go away.

This is my BrainSome days I still struggle with the not knowing. I truly hate the “watch and wait” option. Been there, still doing that. But this bugger is not an “easy fix” at this point. If it starts to enlarge or change shape, more coils could be in order. Sure, why not! Let’s load me up with more metal. 20 coils, a stent, and a clip. My Brain Bling!

As I was reminded during the survivor’s breakfast last week in NYC, I need to remember how blessed I am and that I should continue to be grateful. I AM grateful and I know I am blessed, but I have also been devastated by brain aneurysms in losing my sister, leaving a 15-year old son behind. I’m devastated by Dave’s niece Kim dying at the far-too young age of 32 and being found by her mother. No one should have to endure that and it broke my heart.

If my long, often soap-boxy blog can help just one person and educate anyone about brain aneurysms, then I am doing something right. I am doing something positive and I am doing SOMETHING to help shed light on the deadly consequences of ignoring symptoms that could kill you or a loved one.

I suppose God left ME here to be one of the voices for those who aren’t with us anymore. It is my honor to do so.

Me! Brain Aneurysm Survivor

Thank you to all of those people who supported me during that time I was in the hospital 10 years ago and the following months of initial recovery. I couldn’t have done any of it without my Maine man, however. He’s my rock, my chauffeur, my nurse, my sounding board, and my love. I am blessed to have had him in my life 10 years ago to help save me.

Learn about brain aneurysms and spread the word! Symptoms of a Brain Aneurysm

Life. Support. Music.

Published on by heiditea3 Comments

At last month’s brain aneurysm support group, we watched a documentary about a musician from New York City who, against all odds, survived a ruptured AVM. Through the amazing support group around him including family and friends, he was able to not only recover, but prove most of the doctors wrong with their devastating diagnosis’.  Watch a brief follow-up online about the documentary with Jason and his sister HERE.

Tonight, we were able to meet Jason Crigler in person, hear his story first hand, and ask him questions. There truly aren’t enough descriptive adjectives to convey what one feels after hearing and seeing Jason’s story.

In 2005, soon after he returned home from a year-long stay in the hospital, Jason's family (his daughter, wife and father) take him for a walk in the woods.

He is a soft-spoken, warm, and funny man. If you didn’t know his story, one would never know the extent of the struggles he and his young family have had to endure.

Jason’s story was documented by a friend who video taped much of his early recovery and made it into a critically-acclaimed documentary called LIFE. SUPPORT. MUSIC. It’s painful to watch, especially as a survivor of a brain injury myself. He could be me…I could be him. The uphill battles are all very similar, but Jason was very motivate to recover with a new-born baby girl, a budding music career in New York City and a family that sacrificed their own lives and comfort to care for him on an hourly basis.

Tonight was very special and it’s a damn shame more people (even from our own groups) could not attend this widely publicized event. The old adage, you can lead a horse to water but you can’t make him drink, held true tonight I guess. You get what you give…and some people give more than they have to give, but receive very little in return. It’s a damn shame.

Jason’s story is a story that needs to be heard and obsorbed. I only wish I could speak as eloquently and effectively as Jason does, or I’d take my little stent, coil & clip show on the road too. But who the hell would show up to listen to me? Probably only just a few. I know my story isn’t nearly as compelling. We can’t even get an article written about our group.

There was one article written a couple of years ago. About a woman who only came to our meetings maybe two times. She was certainly very attractive & photogenic and lived in an influential area, so that right there was two up on me. Even the one small TV spot we DID have ended up being shared by a completely un-related disease, so we couldn’t even get a full 2-minute spot for ourselves. Really? What DO we have to do????

But…even if we did…would it make any difference? We met a few new people tonight and we welcomed them with open arms as we always do. I hope we see them again and that they spread the word about our group and our efforts to raise brain aneurysm awareness in the state. Exposure could save lives….WE could save lives.

I think you’d be hard pressed to find a group like ours (or at least that one special person) that gives such personal attention to those who have reached out to us. I don’t think the president of many organizations would send personalized emails complete with moving letters and related photos to someone who writes and donates and expressed great regret they’ll be unable to attend this year’s event after having attended all of the other previous ones. I think it’s the personal touch that sets us apart from other groups. The behind-the-scenes workings are amazing and the hard work that goes into every event, every email, every newsletter, and meeting follow up, is more than most are doing. Does it matter?

People need to DO more. They are not and it could mean lives of people are being lost as a result. Picking up food for an event will feed the volunteers and participants. For one day out of YOUR life, you could help an event run smoothly and make it a success, meaning those who attended and those who heard about it and read our materials will remember what the event was about and LEARN….and potentially save a life of the next person who has the “worst headache of my life”.

(stepping down off my soap-box now)……back to Jason Crigler.

Jason’s positive & simple attitude about his AVM and recovery is truly inspirational. Many things he spoke about tonight touched me deeply and certainly would have touched a lot more people if they had taken the long hour and a half out of their busy lives.

One thing he said was that there is “strength & power in thought”. We can choose to think we’re failing or think we’re succeeding and it can truly effect the rest of your body. He admits to bad days and depression and despair just like the rest of us, but it’s reminding yourself of the struggles you HAVE overcome and how far you have come that one needs to be reminded of. We all have struggles on a day-to-day basis, but it’s how you deal with, and think about them, that can lead you to a path of strength and power.

I needed to hear those words tonight. My 10-year Annie-versary of my ruptured brain aneurysm is coming up on Oct. 4th. I’m lucky to be here. I know that. I also know others haven’t been so lucky and if sharing my story can save one life, I’m going to do it. If complaining about a lack of support can garner a little bit more, then I’m going to do it.

My sister died from a ruptured brain aneurysm. I had to see her lying in a hospital bed completely unresponsive on a ventilator, with her head shaved, with wires in her open skull and a drain relieving blood from her brain. She was basically gone at that point but we held out hope for a miracle. It never came. I may have failed saving my own sister in educating her enough on the signs and symptoms, but I MAY be able to save one other person. I MAY be able to help one person recognize the symptoms and get them to a hospital in time.

I have to hold on to that…otherwise, why was I saved and Dori wasn’t and why was I saved and Dave’s beautiful 32-year old niece Kim wasn’t? Two beautiful, sweet, funny souls who did nothing but good for others. I’m not nearly as beautiful or sweet, so I have funny going for me…and a chance to DO something in this world and get the word out and share my story.

I may not have friends who care enough about me to film a  documentary, come to our events and support me, tour the country and make money from it, but I DO know I am blessed to be here still.

THANK YOU Jason, for sharing your story, answering our questions, and driving all the way up to Portland to meet with us. And thank you for making people aware of the struggles people with brain injuries can endure…and more importantly, can overcome. You’re a true inspiration!

 

Racing Against Brain Aneurysms

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DSCN5454

The title says it all: the sooner we get the best, up-to-date accurate facts out to people, the more lives we can save!

Such is the message behind the hood and rear, deck lid sponsorship on the #52 Chevy Camaro for this weekends NASCAR Xfinity race at New Hampshire Motor Speedway.

The Lisa Colagrossi Foundation, a worldwide leader in raising awareness for brain aneurysms, sponsored the car driven by Iowa native, Joey Gase. The foundation asked for people effected by brain aneurysms to donate money to have either their name or photo of a loved one on the car during the race. The amount of exposure Joey and the car got on this national event was priceless.

Dave and I were asked as special guests to attend the race. And we cannot say enough about Joey and his father Bob. They were extremely generous with their time and hospitality. We certainly never demanded or asked of anything, but they offered so much from golf cart transport to ear plugs and water. Respect breeds respect.

The car was beautiful (if you can say that about a stock car) and seeing it in person was emotional. Watching Dori and Kim’s photo leave the garage area was almost like setting them free to go fly on the track. 32 individuals effected by brain aneurysms were on the car including notable figures such as Albert Haynesworth (NFL), Maryam Dabo (James Bond girl), Andre Jones (TJ Jones/NFL, Detroit Lions father), and Ashley Harris (wife of Tommie Harris/NFL, Chicago Bears) and a few not-so-notable figures such as myself, my sister Dori and Dave’s niece Kim.

Bob Gase and Todd Crawford were wonderful hosts and showed us around the track. We also had an opportunity to spend time with Joey in his hauler to cool off and get out of the sound and noise. He’s a wonderful young man and shouldn’t have had to lose his mother at such a young age. I had fun talking racing with him – he may not say the same. 🙂 Dave and I are big NASCAR fans and we have been following him in the Xfinity series and the few cup starts he has had.

This summer weekend race at New Hampshire is always a busy one in the garage area because they have three different series racing on Saturday and the Sprint Cup teams also had several practices, so there were opportunities to see a lot of on-track action. We enjoyed some of the Whelen Modified race and got to see the end of one of the cup practices. With the pit access we had, we were able to get close to some of the cars and drivers on pit road. Dave snapped a photo of Jack Rousch and saw Richard Childress walking by. We’ve been to three races at NHMS before, but this was a different experience for sure.

The pit and garage areas are regular hives of activities throughout the day and one needs to be aware of your surroundings. Many carts, cars, gas cans, and groups of media moving back and forth between the garages and trackside. I was run into on pit road during the modified race because I had ear plugs in and he couldn’t stop the large cart. He hit me gently and did apologize and we had a laugh.

The weekly circus that is NASCAR is amazing. The logistics and organization that goes into each team and just getting the event produced is impressive. And then add to that the wonderful staff at New Hampshire Motor Speedway who could not have been nicer. A stellar group of people and a lot of fun.

We were able to take many photos with Joey at the car before the Xfinity race as well as stand next to the car during opening ceremonies and the singing of the anthem. Something I’ve only seen on TV previously, or in the stands. This perspective was a lot of fun and It was emotional to be standing next to the car and see our loved ones there with us.

Then after the anthem was sung Joey’s dad led us over to the team’s pit area and informed us we’d be sitting on top of the pit box for the race! Now THAT was very, very unexpected. We weren’t really sure where we’d be to watch the race, but I hadn’t even thought about the actual pit box that is wheeled over from the hauler. It was a tight fit, but Todd, Dave and I climbed the narrow ladder to the three chairs for us. What an amazing view for a race! Dave and I geeked out a wee bit I think.

The sounds and smells of the cars racing by and coming in for pit stops is either something you love or hate. I happened to be one of those people that loves it. My sister Dori and I always used to go the demolition derbies at our local fairgrounds every year until I moved to Maine in 2001. She was also a NASCAR fan back in the day and I truly felt her with my on top of that pit box geeking out with Dave and I and enjoying the event immensely.

Joey didn’t qualify for the race very well, but he move up during the race and finished a respectable 25th place out of 30 cars. He is a good driver. He doesn’t ruffle any feathers on the track and hasn’t caused any fights on pit road or in the garage area (that I’m aware of!) and I think he has treated other drivers with respect. Again…respect breeds respect. I think the two media pieces produced by NBC Sports about Joey over the weekend were a reflection of the kind of young man he is and how he has taken something that is very painful and is helping others. It was a pleasure to meet Joey and his dad and we will continue to support him and cheer for him on a weekly basis.

It was a special, special day at the track and it was wonderful to get close to the action. As a double brain aneurysm survivor, I took great pride in having my name on the car and hoping the words “brain aneurysm” have now entered into the vocabulary of the NASCAR community in a bigger fashion. There are a few people who have even effected within the NASCAR family and we know they’re going to be helping TLCF help raise awareness and make the public more aware of the symptoms and their own personal stories.

Thank you to Todd Crawford and The Lisa Colagrossi Foundation for making this day possible. We look forward to future endeavors and helping to save lives.

  • View photos below and visit our Facebook page for more photos at: KAT-Walk & Karo5k

EXTRA, EXTRA! Read All About It!

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I wanted to let my blog followers (all four of you), family, or friends know about something special that is happening this coming Saturday on July 16th at the New Hampshire Motor Speedway. Even if you’re not a racing fan, we hope you will watch the pre-race show and the race to show your support for brain aneurysm awareness. The race is on NBCSN (which is NBC Sports Network) on your cable system – NOT just NBC. Or, if you’re in the New Hampshire area, come on over to the speedway the day of the race! Tickets are very affordable there.

Car Hood
This main logo will soon be joined by the faces and names of those affected by brain aneurysms.

A national foundation for brain aneurysm awareness (The Lisa Colagrossi Foundation) is sponsoring the hood of a NASCAR Xfinity Series car in the Saturday race. The Xfinity series is one level below the main Sprint Cup Series, which has the big boys like Earnhardt, Jr., and Tony Stewart in it. XFinity is kind of like the Double-A club in baseball. However, their races or broadcast nationally every week.

TLCF (the foundation) held a fundraising campaign to have the photos or names of a loved one who suffered or survived a brain aneurysm put on the car for the race to help raise awareness. I donated to have my sister Dori White‘s photo and name put on the car and I will also have my name (no photo) on the car as a survivor.

Kim and Dori
Kim and Dori will be honored on the car.

My husband Dave put his niece Kim Tudor‘s photo on the hood and our local Maine group The Maine Brain Aneurysm Awareness Committee will have their name on the car promoting our Kat-Walk & Karo-5k in September.

This is a HUGE deal for brain aneurysm awareness and Todd Crawford, the founder of the TLCF, is making some major strides in reaching a larger audience nationally. He lost his wife Lisa (who was an ABC reporter in NYC) to a ruptured brain aneurysm last March in 2015.

The driver is Joey Gase and he’ll be driving the #52 car. Joey lost his mother to a ruptured brain aneurysm and has done a lot of work with the Donate Life organization because his mom’s organs were donated and he was able to meet the recipients. Very moving stuff. We are thrilled he is helping us get more national exposure.

Todd informed us that NBCSN will be producing a vignette with he and Joey to highlight the special partnership and cause (Brain Aneurysms) and that it will likely air in the pre-race telecast of the race and the announcers will talk about the car and partnership at times during the race.

Dave and I are going to the race next weekend. The race starts around 4 p.m. We have been to races at NH before but we’re pretty excited about this one. The event will have double meaning & emotion seeing those photos and names on the car hood.

Thank you to Joey Gase, the NASCAR Xfinity Series, and Todd Crawford and the Lisa Colagrossi Foundation for their efforts in helping raise brain aneurysm awareness and saving lives!